About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.

Sunday, August 17, 2008

MS is a shitty illness!

I hate this MS it has ruined my life and devastated our lives together.

Just before I fell over those cracked and twisted paving stones at work in 2005 we were so blissfully happy together.

Then I went through months of pain and physio, at the beginning of 2006 it seemed my knee was getting better but then it seemed to stagnate and by March it was one step forwards and two backwards.

Its not that we are not happy together now but this MS has really changed our lives it has taken away all our little enjoyments like strolling hand in hand by the canals at night.

Like going shopping together(in shops-often not accessible in a wheelchair) or cooking together, going out with the dogsort going to a gig and making love.

That is all gone now and there are only happy memories which are very sweet but sadly only memories.

Feel we are both too young to be denied all that life but have to accept that this is reality now.

And that tomorrow when I wake up I won't be able to get up on my own and go to the bathroom have a shower and brush my teeth and dress myself and go into the kitchen and make us tea.

None of that sounds very ambitious but for me it is an ambition that I will never be able to realise again.

Not in anything but a dream.

Recently my dreams have been about cooking, something that was a big passion for me and something that was my job here when I was first in Amsterdam.

Now its become a dream, recently fell asleep imaging I was making scrambled eggs.

And now the reality is that I can just about eat so definitely no chance of cooking anything even something as simple as scrambled eggs.

These days it is a struggle to sit upright in the wheelchair as besides the MS it seems my spine has become curved.

My right leg muscle has become so wasted after not being able to walk properly since September 2005 it means that my body sags away to the right so my body looks twisted to the right.

It certainly not good news for my already fragile sense of self and identity to also feel so unattractive.

Do talk alot to myself about this and try my best to persuade myself that it is not so and that I am as vibrant and attractive as ever but not sure that I really believe myself.

Really can not believe how quick the MS has progressed since the diagnosis in July 2006.

Then I could still get about with the help of Nordic sticks but by August 2006 had to borrow a wheelchair so that I could leave the flat as from July could not walk very far.

Could just about get down the two flights of stairs but no further without the wheelchair.

That wheelchair was horrible really too big for me a real bone shaker that rattled and shook and made me feel it was going to split and disintegrate at every moment.

Very uncomfortable chair and pretty shitty that this is the chair that great numbers of sick and fragile people get when they ask for help.

Have discovered since the diagnosis that this society is very uncaring towards the sick and vulnerable.

It is very difficult to get help and the help you get is as cheap as possible.

So the message is loud ad clear that its shit to get sick if you are not well off.

Have got a pressure sore on my bottom and have tried to get the city of Amsterdam to give me a air cushion for my wheelchair but apparently that is an expense that they feel is not justified.

Yet it is well known that pressure sores are very bad news for people in wheelchairs.

But that is the penny pinching world of health and social care in 2008.

Health care has many people employed just to make sure no-one gets anything they are not entitled to.

Which means alot of people spend valuable time and resources ticking boxes instead of giving people the things they need to make a difficult situation liveable.

Its a crazy world where its ok for companies to make millions of euros profit while handicapped people are told that the wheelchair they want and which is best for them won't be available to them as it costs too much.

A world turned upside down where profit is king and disability is your own hard luck.

3 comments:

Oh Herrad, I am so sorry you are so down in the dumps. I didn't realize that getting an air cushion would be so hard for you to get in your country.

If you like I will purchase it and send it to you for free. I want you to have it. I can't believe that things are so available here even to the point that some take it for granted and yet in other countries, things are scarce.

Please let me know if I can do this by emailing me your name, address, and any other postal info I would need to mail you a package. adigeorge2@hotmail.com

oh no...i haven't been here to visit in some days. the last post i read from you was about being with friends and you seemed very happy. i know this is a bad time for you. i can't even imagine what you are going through. it seems anne is going to coordinate something to help. let me ask around as well. i will come back to check up on you.

I came here through Anne...And I am so sorry you are going through such a really really bad time....Anne is dear to offer her help, and just know, I am thinking of you and send you all good thoughts! My neice has MS and has been struggling with it for about 14 years....So I know a tiny bit about it....My heart goes out to you and I wish you all the best, and hope that things will not look so bleak, very very soon! You are right, it is a Shitty disease!